Find other people with Alopecia Universalis

Hey everyone my name is Charles Iam 34 and I’ve been coping with this disorder for 12 or 13 years.I know how mentaly devastating it can be watching your entire apperance change,so quickly and drasticly.First I had to shave my head and at the time I had been growing my hair long for about three years(my wife loved my pony tail).So I’m like Okay I can deal with a few little bald spots on my head.At the time my doctor explained the effects of alopecia areta.Well then a week or two later I notice my eye-lashes,eye-brows,etc.So I go back to the dermatoligist and he tells me that I am dealing with alopecia universalis.Over the course of the next four months me and my family watched my transformation take its course.Luckily for me the love of my two children is unconditional,as any parent knows,and my wife was also very supportive and compassionate to my plight.We were all thankful for the fact that this was not life threating.Infact in a lot of ways it made me a better person.I had a new found respect for Valerie knowing that she still loved me no matter what I looked liked,but from that point foward our lives would never be the same.I began to withdraw from contact with our friends,school activities,and various obligations.I just got sick of the stares and laughs made by strangers.Constantly explaining to people that I don’t have cancer etc.This went on for a year or so before I learned how to deal with alot of these issues.As I came out of my shell we accomplished so many things over the next 14 years.Which finally brings my story to this present day(if anyone is still reading).July 14 I head to work like any normal day.Except I didn’t get the chance to kiss my wife and tell her “I Love You.”She had worked 11 to 7 at the hospital so I didn’t wake her.So when I arrive home later that day I notice pictures missing.Then our son comes out of his room crying and visibly shaken.”Mom’s taken some of her things.She said she’s fallen in love with someone from work and they are going to live together and make a new life.”Two days later she shows up with the Sheriff gathers her possesions and springs a custody order full of false allegations.True or false the courts award her temporary custody of both our children.Im devastated!Every thing I’ve known and loved for the last 17 years taken from me in the blink of an eye.So a month or so has passed and it’s apperent she wants no part of salvaging our relationship.Any way the reason Ive shered this is I am not finding any support groups for alopecia in western N.Y. I hope talking our writing with people who have this in common with me will help.Ive never ment anyone else with alopecia.I welcome any comments or info that can help me in a positive way.I respect all who have delt with this disorder.

I would like to know if there are any women with alopeicia universalis that have conceived a child by using their fallopian tubes.

I have universalis and because I don’t have cilia in my nose, throat… I wonder if I have any in my fallopian tubes and I am trying to get pregnant.

Hi My Name is kelly iam a 27 year old female i have had alopecia now for almost a year like some of you i to noticed a couple of spots and then it just started falling out I have no hair on my head now aprt from a few patches.
I to cant stand it I look like a totally different person and it makes me so sad sometimes.
I have lost my eyebrows and eyelashes to and this is what makes us look like women.
Having this taken away is so unfair hopefully doctors out there will be able to come up with a cure.
I have had a special prosthesis made a vaccum suction one that sticks to your head but i cant stand it now that i have had no hair over the last year i cant stand it on my head I WANT MY OWN…......
Tried photo therapy for a bit then stoped i dont think it would have made a difference any how.
would like to hear from anybody else who had had any luck with any treatment.

Hello all.
My name is Erik Mastriano and I have very beautiful red hair. Wait, scratch that, i USED to have red hair. I am 15 and live in Connecticut. I am a sophomore (10th) in high school and i have had alopecia since 7th grade. I first noticed a bald spot in the lower right corner of my head. This happened in the beginning/middle of the year. We just thought it was nothing and it grew back. In the beginning of 8th grade i had a full head. But at the end of Christmas break, which is the middle of the year, i was completly bald. My dad and I went to the doctor, which was where i got diagnosed with AA. We did the topical creams, the pills, basically everything out there. We did injections, which actually filled in my head pretty well. Now this was in April/May. About a month after that my head just went completly bald. Again. Now remember i am still in school. We dont get out till June 20th. I was getting made fun of here and there but nothing too bad. I blamed it on my sister that she had put duct tape on my head. But when my head didnt regrow for 3 months, people began to question everything. But i remained true to the lie till the end of the year. I’ve only ever told one person besides my family. My best friend since first grade, Justin. He has been very supportave and is my closest friend ever. The summer went by quick and soon freshman year would start. At the high school that i attend, hats are allowed unless a teacher says NO. My mom and I had to go in early and ask each teacher if i could wear a hat to class. That has worked out for 1.85 years, as this one is almost over. i wear a hood because that protects kids from hitting the hat off. We are doing stupid creams and other stuff that just sit in all night. And do nothing. Although i cant remember the stuff we are using now has given me a lot of fuzz on the top of my head.

That is my story. Thanks if ya made it all the way to the end. If not, then thanks anyways.

ive had it for 16 years…im 17

I’ve been living with alopecia since age 11 and I’m now in my twenties. As a women it has been a difficult journey of hiding under hats, avoiding activities and going out. Over the years everyday gets better than the day before, but I do have bad days where I feel like…......... and the list goes on and on and on. What keeps me is my relationship with GOD and the way he has blessed me. Instead of being mad at GOD and questioning why me, its drawing me closer to him. Even though GOD is with me I’m still human and I don’t even know if I can come to terms with this.

Yes, I’m barren too. My name is Erica and I’ve had AU for 3 1/2 years. I got my first spot about 7 months before my wedding. Pretty tramatic for me. I got married in August 2004. I had two spots in the front, but I was able to cover them with the rest of my hair. By February 2005, my hair was completely gone. I was so…I don’t know what I was. I felt alone, depressed, unbeautiful and angry. I didn’t know why this had to happen to me at the beginning of my new life with Chris. Valentines Day 05’, I bought my first wig. I felt like a fake. I kept praying to God asking Him to help me through it (and He has)and thinking that my husband was going to leave me because I didn’t have any hair. Well, here it is 2008 and I still have no hair and I still have my husband. At the beginning, I went to my dermatologist pretty faithfully for treatments and then I just thought, this can’t be good for my health. I stopped the treatments in 2005 and I’ve been treatment free since. I can’t say I won’t try anything ever again, but for now I’ll just stick to wigs. I just had my first child in September 2007. While I was pregnant, I had a bunch of hair grow in the back. It was so exciting to see my hair after so long. After she was born, it fell out again. I even had a few eyelashes grow back. I was so scared that my daughter was going to be bald just like me, but she was born with a full head of hair. Trusting in the Lord is the TRUE medicine for coping with this hair loss. I don’t know why He allowed it to happen to me at the time that it happened, but I know that His way is perfect (Even on days when I’m sad). I just know that even if my hair doesn’t come back, It’s gonna work for good. I recently went to MD Anderson Hospital for an Alopecia thingy(they took a lot of my blood). The lady said that I had fuzzy hair on my head; I just can’t see it. I told her I thought my scalp was dry and flaky (lol). Oh well, I don’t mean to bore you to death with this story. I guess the point is this: that lady told me that she was pretty amazed at seeing someone with AU smiling so much. I told her, don’t get me wrong, I have bad days too, but since my daughter has come into my life, I can’t help but smile. She is the joy of my days and I know the Lord gave her to me. If all else fails, trust God, find a good wig and do something that you truly love. If anyone knows where I can get a good quality wig for a good price, let me know.

Still hoping & praying,
Erica

Hi all bald and beautiful people there…

I’m a 28yrs old guy from India. I have AU for over 7 yrs now , and I’m still struggling to cope with it. The main problem with
AU is that it has a major blow on your looks and changes your image completely , which is not accepted by people in most cases. As many other friends here have already mentioned , AU makes it very difficult to establish and maintain a relationship , especially with the opposite gender. Although AU has almost no physical impacts except for spoiled looks , it makes a drastic impact psychologically.

I’m still struggling to cope up with my image , in case I come across something positive , I’ll definitely share it with you all.

My altered appearance was a big factor in my divorce. It’s amazing how shallow some people can be. I hope the ex-wife never gets a wrinkle or the slightest imperfection. How could she get by? I’ve had full regrowth, but worry it will return and I’ll go through the same relationship experience again. Like some of the stories I’ve read her, alopecia makes it harder to get close to someone again.

Ciao
io sono lui 50 anni
e tanta nostalgia dei miei capelli.